As the world entered a new era, twenty years ago, of joy and optimism, for some life was taking them on a different course, to somewhere unknown, which Claire Stevens remembers all too well.
Claire opens up and talks candidly about what life was like for her and Bob Stevens her husband, as new parents, as we get transported back to two decades ago. Claire and Bob were just beginning their new life, with dreams to have their own family. It was not long before their dream became true, when Claire gave birth to a beautiful baby boy, Oliver. Oliver was barely a day old, when his start to life was very precarious, as Claire remembers, saying, “Oliver's medical notes began with a 'crash call to theatre'. He suffered a brain haemorrhage at birth, due to pre-natal distress.”
Oliver was then put in SCBU for over three weeks, where they met the lovely Dr Evans, who diagnosed Oliver with a brain bleed on day 5 and was then monitored carefully to see how he was growing and to check his milestones.
As Claire and Bob took their baby boy back hone, life then took on a different direction again, when Oliver was 2. Dr Evans had received a letter from Claire and Bob’s GP and Claire says. “She asked him to look into a heart murmur she had detected in Oliver, who had had something crazy like six lots of antibiotics over eleven weeks from various infections. We saw him two weeks later”
However, on that day what should have been just a check up on Oliver’s heart, it soon turned into a day which change their lives forever, as Claire says, “ Unbeknown to us, he recognised the coarse facial features of MPS.”
The news came as a shattering blow and Claire goes on to say, “He sent off a urine sample and saw us the following week for a heart scan. He briefly mentioned something called mucopolysaccharidosis, or MPS for short. I asked him to write the whole word down as I wouldn't be able to remember it and he said he didn't want us going on the Internet. I assured him I wouldn't...”
Claire and Bob set off home in a state of shock and utter bewilderment. Although Claire told the doctor that she would not look up, what the word meant, Bob however had other ideas, as Claire says, “Back home, Bob grabbed the piece of paper from my hand and disappeared off to the computer!! He appeared sometime later in bits and said there were several conditions under the Mucopolysaccharidosis heading and he had clicked on Hunter Syndrome. After a brief outline of a bleak future I said he should try and find a better one!! Two days later the result came through as positive and our lives changed in an instant.”
The news that Oliver had Hunters Syndrome left Claire and Bob in dismay and life, from then on was never quite be the same again.
Stay tuned, for the next chapter of Claire and Bob's life.